Advocacy and Autism Awareness Month Collide

In honor of Autism Awareness Month, Hearts for Home Care is celebrating those living with Autism Spectrum Disorder and raising awareness on the issues they face every day.

26-year-old Grant Williams with father Bob.

Grant Williams is an active and intellectually curious 26-year-old living with autism, cerebral palsy, and was born with a Traumatic Brain Injury (TBI). However, none of those diagnoses slow him down! “Grant isn’t a geriatric—he is energetic and needs to be able to go outside and engage in his environment daily. But he can’t do it alone—his cognitive and communication skills, plus his balance and coordination, prevent him from being fully independent,” Grant’s father, Bob Williams says. That’s where Grant’s home health aides come to his assistance.

Grant is part of the New Jersey Personal Care Assistant (PCA) program – a state-funded program that allows qualifying adults and seniors who may otherwise be relegated to full-time facility care (i.e. nursing home), to remain in their communities as independently as possible with assistance from home health aides (HHAs). This program assists individuals living with physical and developmental disabilities with daily activities like dressing, bathing, walking, and tasks that would otherwise be too difficult or too dangerous for the individual to perform alone. The PCA program has been a lifeline for the William’s family for the past five years and since COVID-19 hit and shut down Grant’s full-day program, care at home became even more vital to their family.

Grant with HHA Grace.

Bob also has his own permanent disability, and Grant’s HHA care was especially critical after Bob’s invasive back surgery all but incapacitated him in December. “Grant is a big guy — he’s about 5’11 and 175 pounds, so I can’t manage him with my own health issues, plus his,” says Bob. However, finding a home health aide for those who are qualified for the PCA program and authorized by their doctors for home health aide care still isn’t easy. Grant has had many aides leave for other industries and settings. Bob has seen a revolving door of aides and understands why it is so difficult for them to stay in the industry, even if they love what they do: “Aides who love their work tend to leave the industry to receive a higher education degree, or to find work in other settings like hospitals or nursing homes. At the end of the day, they can’t make fair wages in the home care field,” says Bob.

Bob has been an avid advocate for Grant throughout his life, ensuring he has the best care and opportunities possible. However, this past year Bob has jumped through hoops to ensure the safety of his son and those taking care of him. When his treasured aide Grace was having difficulty getting to and from Grant’s parents’ homes from her hometown of Camden due to public transportation issues stemming from COVID, Bob took it upon himself to drive Grace to and from her shifts. Now, Grace, like many of Grant’s former aides, has been reassigned to a new client closer to her home.

“It’s a revolving door of aides—and Grant’s ability to continue to learn and habilitate is affected. The workforce is thinning out—and COVID is making it more difficult for people to enter the home healthcare industry because of the dangers of the virus and the unsustainability of low wages in the field.”

Grant and Bob were recently featured in a Scripps Network piece highlighting these exact issues that have plagued state-funded home health programs for years and have only been exacerbated due to COVID-19.

Scripps Network piece shedding light on the demand for home health aides across the country ─ featuring Bob and Grant Williams.

Bob continues to go above and beyond to advocate for his son in hopes that New Jersey’s governor and legislature will consider expanding access to home health care and services designed specifically for autistic and other developmentally delayed individuals. The state’s PCA program and many other home and community-based services (HCBS) are fully funded by the state. And—as the state population continues to age and as more individuals and the government see the health, safety, and cost-savings benefits of home care—it is important for state governments to ensure that the workforce is sufficient to allow residents and their families the care they need to stay safe in their homes, and as independent as possible within their communities.

Advocacy Matters!

At Hearts for Home Care, we help those that care about home care by enabling you to get involved at the capacity in which you’re able to do so. Email us at advocacy@bayada.com or follow us on Facebook.com/Hearts4HomeCare in order to learn more about the home care advocacy community and find opportunities to get involved.

2019 National Ambassador of the Year: Shelby Myers

Advocacy became part of the culture at BAYADA Home Health Care a little over 10 years ago out of a need for a collective voice to speak on behalf of our clients, families, and field staff who are impacted every day by home care. As Chief Government Affairs Officer Dave Totaro, likes to say, “If you want to go fast, go alone. If you want to go far, go together.” And that’s what we did. We banded together a voluntary group of advocates within the company with the single purpose of acting as a voice for those in the home care community that may not have had the opportunity otherwise ─ they are our Hearts for Home Care Ambassadors. 

Our ambassadors serve as the liaison between the Hearts for Home Care advocacy team and their co-workers and home care community. Their primary responsibility is to develop and foster relationships with their direct-constituent legislators to spread awareness and advocate for better wages for field staff, more approved hours for clients, and the overall governmental investment in the home care industry. Year after year, our ambassadors go above and beyond to ensure legislators are aware of the crucial importance of home care for so many families across the country. 

A few weeks ago, Hearts for Home Care presented the 2019 National Ambassador of the Year award to Shelby Myers for her role as a dedicated, passionate, and influential ambassador. As an ambassador in New Jersey, Shelby’s advocacy efforts were abundant ─ She developed her own platform to share client and employee stories through a podcast, Clayton’s Voice, she arranged home visits in which she invited legislators into the home of a client to showcase the everyday process of care, she arranged legislative roundtables with office staff and key decision makers, and she also met with many legislators individually advocating on her own.  For these reasons and many more, Shelby was the clear choice as the 2019 honoree.

Shelby Myers:

“This award is truly a culmination of efforts by so many individuals. Although I humbly accept it, by no means am I the primary recipient – that honor should be given to the families I was privileged to represent. Their powerful and sometimes heartbreaking stories, were the driving force behind legislation in New Jersey. I have no doubt that their voices were echoed in the ears of our lawmakers as they were voting on important home care legislation. Our role as ambassadors is essential to the well-being of our clients, families, and the compassionate field staff that takes care of them. Hearts for Home Care offers something that many of them have lost – hope. H4HC shifts the impossibility of their situation to a probability of hopeful change. Not only can we evoke change legislatively, but we empower families by showing how even the smallest of voices can create the largest of changes ─ I truly held this privilege in the highest regard. As Emerson so eloquently expressed in his description of success, “To know even one life has breathed easier because you have lived. This is to have succeeded!” I feel enormously blessed and grateful for every family I met, every story I heard, and every hand I held this past year. Additionally, I want to thank all of the BAYADA employees who gave me the opportunity to meet their clients and families, to the Hearts for Home Care team for the advocacy experiences you foster to elicit change, and to all of my mentors – thank you for changing my life.”

NJ PCA Beneficiary Keith Braswell: New Jersey Paraplegic’s Life Put on Hold When Home Health Aide is not Available

Many New Jersey seniors and adults with disabilities are able to stay safe and independent at home due to assistance from Home Health Aides (HHAs) under the state’s Personal Care Assistant (PCA) program

NJ Blog Takeover: Paraplegic Keith Braswell writes about his life with a severe disability – and how working with his aide through NJ’s Personal Care Assistant (PCA) program has helped him to live life on his own terms.

My name is Keith Braswell and a car accident in 2008 forced my entire way of life to change. I was left paraplegic and since then, I have been able to remain a vital, active member of my community thanks to the help of my home health aide, Quisela. As a 46-year-old adult, it can be tough for me to rely on someone else for everything from getting out of bed, bathing, eating laundry etc., but Quisela does everything she can to make sure that I feel safe and comfortable.

While Quisela is very reliable, filling all of my state-approved 40 hours of care without a day off, her choice to stay working as a home health aide is becoming more unrealistic by the day. This is because New Jersey’s Medicaid reimbursement rates under the Personal Care Assistant (PCA) program—the one that I and thousands of others like me rely on—don’t allow for aides to make a fairwage for the compassionate work they do. For example, in Newton, aides make minimum wage to slightly above minimum wage, and can often secure jobs with less required training, stress, and physical requirements at places like Walmart, Home Depot or Dollar General—all of which are located within the municipality or along route 206. This is especially true since NJ raised minimum wage in the beginning of year, while the Medicaid reimbursement rate remained stagnant.

I am beyond appreciative of how important Quisela’s vigilant and caring work is to my life, and I frequently go out of my way to make sure she is paid as much as possible, like booking my recent surgery around her vacation time to make sure that she wouldn’t lose any hourly pay. If I were to ever lose my aide, I would likely be forced into an institution which means losing what remains of my independence along with the quality of one-on-one care that I receive at home.

I humbly ask that the state legislature consider an increase in Medicaid reimbursement rates, so that individuals like myself can continue to choose to live independently at home. Many choices were taken away from me because of my injury, and losing this choice as well would be heartbreaking for myself and for thousands like myself across the state of New Jersey.

-Keith Braswell, Newton

About the NJ Blog Takeover: For the next few weeks, Hearts for Home Care will be featuring posts authored by NJ families affected by the state’s shortage of in-home nurses and home health aides to showcase the need for increased funding for New Jersey’s Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs. For more information on how you can get involved and let your elected officials know why increased in-home nursing availability is important to you, email advocacy@bayada.com.

Michelle Lino-Corona: New Jersey Paraplegic’s Life Put on Hold When In-Home Nursing is not Available

NJ Blog Takeover: Michelle, who is the sister of TBI Victim Brandy Lino-Corona, writes about her sister’s life after becoming severely disabled – and how working with nurses through NJ’s Private Duty Nursing (PDN) program has helped her family define their new normal.

Brandy’s family and caregivers surround her bed in her Absecon, NJ home

For the victims of traumatic brain injuries, access to reliable home health care can be the deciding factor that keeps people either permanently institutionalized, or at home with their loving families. My 17-year-old sister, Brandy, suffered a Traumatic Brain Injury (TBI) from a severe car accident in September of 2018. Since then, the state of New Jersey has authorized 16 hours of specialized nursing care per day for Brandy. This care allows her to stay safe at home, and allows my father, mother, and I to lead proactive, fulfilling lives outside the home. However, Brandy rarely receives all of her authorized hours due to New Jersey’s inequitable Medicaid reimbursement rates for their state-funded Private Duty Nursing (PDN) program.

The severity of Brandy’s injuries left her incapable of moving, eating and even breathing on her own. Nurses that work with her need to be up-to-date on life-saving techniques such as tracheostomy care, respiratory treatments, suctioning, monitoring vital signs, feeding tube care and feedings and administering meditations. Additionally, Brandy must be readjusted every two hours in order to combat her risk of skin breakdown and bedsores. This regularly poses as an obstacle when nurses miss their scheduled shifts as this task requires two people due to her size.

Like so many medically-complicated residents of New Jersey, my sister is at risk of institutionalization and/or hospitalization without the proper nursing care she requires. With potential caregivers persuaded by competitive wages and less physically and mentally taxing employment, eligible patients’ access to qualified healthcare professionals diminishes. New Jersey’s legislators need to consider the plight of their most vulnerable constituents and make the decision to increase Medicaid reimbursement rates. An increase in New Jersey’s Medicaid reimbursement rates would provide a second lease on life for Brandy and those like her, as well as instill a sense of hope for their families whose only desire is to be able to continue to care for their loved one in their own home.

-Michelle Lino, Absecon

About the NJ Blog Takeover: For the next few weeks, Hearts for Home Care will be featuring posts authored by NJ families affected by the state’s shortage of in-home nurses and home health aides to showcase the need for increased funding for New Jersey’s Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs. For more information on how you can get involved and let your elected officials know why increased in-home nursing availability is important to you, email advocacy@bayada.com